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DrDLove
DrDLove, Doctor
Category: Health
Satisfied Customers: 13037
Experience:  Family Physician for 10 years, Hospital Medical Director for 10 years.
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(Not to sound mean but I will give a good rating only if you

Resolved Question:

(Not to sound mean but I will give a good rating only if you give advice that is actually useful)
A few days after Easter Sunday I had the worst headache I ever had (excrutiating forehead pain!)
Since then I’ve been experiencing:
• Significant memory problems, confusion, difficulty concentrating, irritability – affects my work drastically
• Forearms and wrists painfully tingle (actually burn)
• Jaw stiffness
• Significant receding gums (actually started a couple months prior) – gums scores were improving every checkup to a point where I no longer had gingivitis – nothing changed and now they are worse than ever when it comes to receding.
• Slurred speech – never had this problem before
• Change in how I walk during increased stress
• Feeling feverish on and off
• Clumsiness – always dropping things
• Getting out of breath easy even when taking asthma medicine – not a problem before
• Fatigue is constant unless I sleep almost twice as long as I used to (was 6hrs now 10)
• Significant blurred vision but don’t need glasses
• Difficulty swallowing
• I was always the one that was warm (no coat in winter) but now I’m always chilly
• Blood test says I have HSV1 and HSV2 – people with this are at higher risk of other STDs.

Any one of these symptoms by themselves can be caused by numerous ailments but if you put them all together, all occurring simultaneously, the list gets real short.
Brain cancer, multiple sclerosis, encephalitis and HIV are the ones that I could find that share most of these symptoms. I’ve had an MRI so that eliminates cancer and MS. Encephalitis was also ruled out. This leaves HIV but I tested negative ELISA for it, though it is the one ailment of these that could give false negative results due to type O, N, or a foreign strain brought here from another country, a new strain.

I’m a Lafayette degreed engineer that has had the same job for 19 years. I know what is real. These symptoms are very real and they point to one thing. I am not delusional.

I am very concerned for my wife and 9 year old daughter also (her age makes sense unfortunately). I’m seeing changes in them that are very troublesome – change in walk, forgetfulness, clumsiness…

Our lives are depending on pursuing further testing for HIV (or if there’s a disease I didn’t think of that causes all of these symptoms at the same time). Maybe antigen testing, PCR testing, Viral load? See a specialist in a world renowned hospital?

I can’t just sit around and allow these symptoms to worsen. I guarantee that is what will happen if this request is ignored.
Submitted: 11 months ago.
Category: Health
Expert:  Camille-Mod replied 11 months ago.

Hello,

I'm Camille, and I’m a moderator for this topic.

We have been working with the professionals to try to help you with your question. Sometimes it may take a bit of time to find the right fit.

I was checking to see if you had already found your answer or if you still needing assistance from one of the professionals.

Please let me know if you wish to continue waiting or if you would like for us to close your question.

Also remember that we have a multitude of categories to help you with all your needs from Health, Pets, Computers, Cars, Finance, Law, to Home Improvement, and more.

Thank you,

Camille

Customer: replied 11 months ago.

I still need help from someone. Thank you

Expert:  Camille-Mod replied 11 months ago.

Hello,

Thank you, XXXXX XXXXX continue to look for a professional to assist you. Since the professionals log in at different times, it is very difficult to predict when one will come on with your particular area of expertise. Please let me know if I can be of any further assistance while you wait.

Best,

Camille

Customer: replied 11 months ago.

OK. thank you

Expert:  DrDLove replied 11 months ago.
I'm sorry that you are going through all of this.

If there is concern that someone has a new strain of HIV that is not detected by the current HIV antibody tests, then performing antigen or viral load tests will be similarly limited, as these tests are also oriented towards the known HIV strains.

Of course, the development of a new strain of HIV is statistically very unlikely, but the HIV infection, itself, was a completely new infection starting a few decades ago, so new infections can occur.

Therefore, the approach to whether someone has a new strain of HIV should be approaches similar to the approach to HIV infection in its infancy before specific testing for the virus was possible, i.e., an assessment based on clinical criteria. Therefore, rather than additional tests for HIV, the approach that is most logical to me would be to see an Infectious Disease specialist for a clinical assessment, including an assessment of immune syystem function. If someone has a new strain of HIV that would be missed by the current HIV testing, there still would be the immune consequences of such an infection. The most common test done to assess immune system function in someone with HIV is the CD4 count.

If you have any further questions, please let me know.

Customer: replied 11 months ago.

Thank you for your very thoughtful response. My CD4 count was tested and it was normal (actually on the high side - I forget the number). So my immune system was normal about 3 months ago. I don't know what I'm going to do next. I am beyond scared because I feel I have nowhere to turn - I'd much rather have cancer because I'd at least have a treatment plan. I can't imagine a worse nightmare!

Expert:  DrDLove replied 11 months ago.
If your CD4 count is normal, then this would not be a new strain of HIV. By the time that HIV would be causing these symptoms, the CD4 count would be affected, regardless of strain.

At this point, you can still be seen by an Infectious Disease specialist, but if it were me, I would prefer to be seen by a Neurologist at a nationally ranked major medical center, such as Johns Hopkins or the Mayo clinic (which are the two facilities that are the highest ranked in the US).

Customer: replied 11 months ago.

Viral load wouldn't help? western blot? I agree, I'd like to go to a renowned expert maybe at Mayo or John Hopkins. I'd like to mail them what I posted here but I don't know if they'd read it

Expert:  DrDLove replied 11 months ago.
The viral load and western blot test will check for the same strain of HIV as is checked with the ELISA test. And since the CD4 count is normal, there is no reason to suspect that HIV is present. There is no risk in getting such testing done beyond the cost involved, but the assessment by the Neurologist would be the preferred step if it were me or someone in my family.

Customer: replied 11 months ago.

Elisa tests for antibodies and Viral load looks directly for HIV. That's my understanding. If I've had HIV for 10 years, is it possible the antibodies aren't showing up? This is why I was thinking Viral Load

Expert:  DrDLove replied 11 months ago.
There are no cases of people with long standing HIV in which the ELISA test is negative, at least not with the currently known strains. If the ELISA test would miss people with long standing HIV infection, then it could not be effectively used as the test for screening donated blood. The only cases of donated blood that have transmitted HIV despite a negative ELISA test are the few in which they have donated blood in the early window after HIV infection before antibodies are created.

Customer: replied 11 months ago.

I thought I read there was a different test for donating. Where they put a bunch of donations together ant then test. Something like viral load or amplified.


 


I have a growing list of symptoms and they seem to be mostly related to the brain... not getting opportunistic infections that I know of.


 


I've seen a neurologist and all he did was some walking around tests and gripping tests and asked a couple questions. Of course I was feeling well that day so nothing showed up but even if I had problems, I don't think he'd say HIV.


 


I can't see it being anything other than an HIV strain. How can so many symptoms happen simultaneously otherwise. If you were experiencing what I am, you'd think the same thing - I see no other alternatives.

Expert:  DrDLove replied 11 months ago.
You can get whatever HIV tests done that you want, but I would seek the opinion of a Neurologist at a nationally recognized medical center.

Customer: replied 11 months ago.

Dr. Is it of your opinion that even though I have all these HIV symptoms simultaneously that HIV should be ruled out? I don't know how I could possibly rule it out. You'd have to imagine yourself experienciencing evertything in my intial post and ask yourself what you would be thinking. It's so convincing to me that I feel further testing has to be HIV related

Expert:  DrDLove replied 11 months ago.
Yes. You have a negative test and evidence that there is no immune deficiency that would be caused by an HIV virus, either by the currently known strains or a novel strain. If you want to be further tested to convince yourself, there is no problem beyond the cost involved, but if I were in your situation, I would be seeking the opinion of a nationally recognized Neurologist. I would see the local Neurologist first, as you have done, but with no apparent diagnosis, I would be seeking more specialized assessment, such as noted above.

Customer: replied 11 months ago.

What I see in my wife and daughter further convinces me there is only one place to look but it seems there is no way to prove it. ELISA isn't 100% and does it cover every strain around the world? If a doctor could feel my symptoms, they'd be convinced of the direction to be looking. They can see the gums but the rest they have to take my word for - if they could experience it...

Expert:  DrDLove replied 11 months ago.
Even in the rare case in which ELISA woul miss an HIV infection, the infection would lower the CD4 count, and your CD4 count is normal.

Customer: replied 11 months ago.

Per http://www.thebody.com/content/art2302.html if you have a normal CD4 cell count, it does not necessarily mean that you do not have HIV.

Expert:  DrDLove replied 11 months ago.
Yes, that is true, but that is referring to early in the course of illness. If the extent and severity of symptoms that you describe were from an HIV infection, though, the CD4 count would be affected.

Customer: replied 11 months ago.

By far the worst symptom is the ability to reason at work. I'm an engineer and planning and reasoning, etc. is very important. The neurologist I saw did nothing in that regard. I saw a psychologist who gave me some memory test and he said it was normal. But what he doesn't understand is I was way above that level a year ago. You have been wonderful and I will give you the highest rating. I just wish I knew what to to next. I hate to sound stupid but I wish I could get tested for HIV and be positive and start getting treatment - this is how I strongly feel

Expert:  DrDLove replied 11 months ago.
As I said above, it is fine to pursue the additional HIV testing, as the only risk would be the cost involved. It also would be OK to seek the opinion of an Infectious Disease specialist if that is what it takes for you to be convinced that you have done everything. But if it were me or someone in my family, I would pursue an evaluation by a nationally ranked Neurology program as the next step, and you can do both of these processes in parallel, so that neither evaluation delays the other.

Customer: replied 11 months ago.

OK. One last thing. As far as viral load type tests. If I did that and it showed I have HIV, could that trump the ELISA negative? Could I begin treatment based on that since I have all these symptoms?

 

Also, I think I had some kind of super immunity before. I never got a flu shot and never got sick. Maybe my CD4 would take longer to go down?

Expert:  DrDLove replied 11 months ago.
Unfortunately, it is not that simple. One of the problems with the viral load tests is that there is a small but real incidence of false positive tests. This only becomes an issue when the viral load test is done as the primary test for diagnosis, such as when someone presents with acute symptoms ~2 weeks after a worrisome exposure, when the antibody tests would not yet be able to detect the HIV. If a viral load test is done and it is falsely positive, it will only be apparent when no antibodies develop over the next weeks and months. It is the risk of a false positive result (along with the high cost) that has kept the viral load test from being recommended by the CDC as the primary test for diagnosis of acute HIV infections.

In your case, the result would also need to be interpreted int he clinical context, an if a positive viral load test is the only evidence of an HIV infection, the Infectious Disease specialist may want to perform repeat testing before considering it to be indicative of an HIV infection. So a single positive viral load test result without other evidence would not trump the negative ELISA test, but repeated positive test results would be indicative of an HIV infection.

I would note that the most common reason for performing viral load tests are in people that are already diagnosed with HIV from a positive ELISA test and a positive Western Blot test, so the concern about false positive results are not an issue, since we already know that the person is HIV positive.

Customer: replied 11 months ago.

I don't know why but I think a viral load test would catch any weird strain I might have. If I tested positive on that then they would probably try Elisa again and it would be negative. But maybe then Viral load again for a positive, being enough to trump Elisa, especially in light of the symptoms. And I'd hope the tests would be covered under my insurance.

Expert:  DrDLove replied 11 months ago.
The current viral load strains are looking for the known strains of HIV, so may miss a novel strain. You would need to check with your insurance company to ascertain the coverage policy for the viral load tests, as some insurances may have specific coverage policies.

Customer: replied 11 months ago.

In some ways it seems illogical to get viral load or amplified, etc. but I see no other options since ELISA was negative. Is it 100% illogical to do more testing? I'm sorry for making you work so hard but I am very appreciative (you are much more caring than other doctors on this site - God bless you!)

Expert:  DrDLove replied 11 months ago.
If it provides you comfort of mind, it is reasonable to do, but as I said above, if it were me or someone in my family, the most important next step would be an assessment by a nationally ranked Neurology program.

Customer: replied 11 months ago.

But if it was positive and I still wasn't given the diagnosis because of neg ELISA, I'd have LESS peace of mind, right?! I don't want to do a test to feel better. I only want to do it if it makes sense


 


Could blurred vision, stiff jaw, cognitive problems all be neurological? I know the gum problems aren't neuorological

Expert:  DrDLove replied 11 months ago.
It may take multiple tests for the reason noted above. Yes, the blurred vision, stiff jaw, and cognitive problems could all be neurologic. In fact, 10 of the 14 bulleted symptoms noted above could be from a primary neurologic problem, which is why I would first pursue a neurologic evaluation.

DrDLove, Doctor
Category: Health
Satisfied Customers: 13037
Experience: Family Physician for 10 years, Hospital Medical Director for 10 years.
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